Ethics & Human Research
Navigating Challenges with IRB Review for Community-Engaged Research with Transgender Youth in the United States
ABSTRACT Navigating the complexities of institutional review board (IRB) determinations in participatory research with transgender youth is essential for prioritizing youth voices and establishing equitable opportunities for research participation. We codesigned an online interactive sexual education tool with an advisory board of transgender youth as lived-experience experts. Early codesign efforts revealed challenges in classifying advisory board members as either research participants or study team members and highlight the frequent irreconcilability between participatory approaches and IRB standards. We describe challenges our research team encountered in the IRB review process and discuss lessons learned, emphasizing the need for flexible IRB guidelines, ongoing consent practices, greater attention to power dynamics, and enhanced IRB education on participatory research, particularly with transgender youth. These lessons highlight critical insights regarding youth involvement in participatory research that are essential for prioritizing youth voices in the creation of effective, youth-led interventions.
